The United Kingdom Facioscapulohumeral Muscular Dystrophy Patient Registry

To join this registry, you need to live in the United Kingdom and have received a diagnosis of Facioscapulohumeral Muscular Dystrophy (FSHD) from a doctor. If you're currently in the process of getting a diagnosis for FSHD, you might also be able to join.

However, you won't be able to join if you live outside of the UK. Also, if you have been diagnosed with a different type of muscular dystrophy or a different muscle condition that isn't FSHD, then this particular registry isn't right for you. It's specifically for people with FSHD.

If you decide to join, you'll first go through a consent process to make sure you understand what you're agreeing to. Then, you'll be able to enter your information onto the registry's secure website. This is mostly done by you, answering questions about your condition and how it affects you. You can see examples of these questions on the registry website before you even sign up.

Once you're in the registry, you'll be asked to update your information once a year. This helps keep the details current and useful for researchers. Optionally, with your permission, if specialist medical or genetic details are needed, your doctor or nurse who looks after you might be asked to provide some extra information. There are no clinic visits, medication, or specific treatments involved in being part of this registry.